Friday, November 19, 2010

Genetic Counselors have far more negative view of Down syndrome than parents

This is a 1990 study done at Dartmouth Medical School  on attitudes toward those with Down syndrome. Source; The American Journal of the Disabled Child. 
It disproves what national Down syndrome organizations have said about the attitude of genetic counselors when they counsel parents expecting a child with Down syndrome. In "Toward Concurrence" the NDSS, NDSC, ACOG , American Society of Medical Genetics and the National Society of Genetic Counselors, all deny that genetic counselors attitudes are overwhelmingly negative about carrying a baby with Down syndrome to term.

 However, the stats below show that genetic counselors do not have any familiarity with real families with a child with Down syndrome and their attitudes, and slightly less than half believe the benefits outweigh the negative aspects of raising a child with Ds. Their attitudes vary widely from nurses who are more positive and even more from parents. Perhaps the nurses have more contact with patients, the genetic counselors tend to be in the office more than out with patients. 

 Am J Dis Child. 1990 Oct;144(10):1112-6. My comments in red. 

Reactions of mothers and medical professionals to a film about Down syndrome.

Department of Maternal and Child Health, Dartmouth Medical School, Hanover, NH 03756.

"Parents, genetic counselors, and nurses were shown an 18-minute video-taped discussion involving parents of persons with Down syndrome and were asked to complete an evaluation. 

Some of the statistically significant differences were as follows: 

89% of mothers believed that the film was an accurate portrayal of parental attitudes compared with 14% of the genetic counselors and 40% of the nurses; shows you who believes parents.

48% of genetic counselors believed that problems outweigh the benefits in parenting a child with Down syndrome, but 94% of mothers and 83% of nurses thought that the benefits predominated; Why don't the genetic counselors ask mothers for their opinons, they obviously make judgments with NO basis in reality. 

 56% of genetic counselors believed that parents of a child with Down syndrome would choose to abort a subsequent affected fetus while only 8% of parents and 10% of nurses agreed. Again, the disconnect between those who give out advice to parents after a prenatal diagnosis, and those in the trenches of raising a child with Ds. 

It is important that medical professionals have a balanced and accurate view of the impact of Down syndrome on families."

Talk about the greatest understatement of the last two decades! Yet, until the past five years when parents became active advocating for their children, no significant changes in this disparity between the opinions of medical professionals and parents were affected. 
We have a lot of work to do, but the burning question remains, do genetic counselors have open minds? Are they willing to let non-professionals, parents and their children, educate them on living with Down syndrome?

Read the entire study here. 
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